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King's College London - Health: More than a medical matter

NZ report recommends changes to PGD regulation

07 August 2006

By Dr Jess Buxton

Appeared in BioNews 370

A new report on embryo testing by the New Zealand Law Foundation has identified some inconsistencies in the way the procedure is regulated. The document, entitled 'Choosing Genes for Future Children: Regulating Preimplantation Genetic Diagnosis', is the first major report from a multidisciplinary project based at the University of Otago. Released on 1 August, it draws on the expertise of researchers in law, bioethics, science, Maori and Paediatrics, who are looking at the extent to which human genome-based technologies should be regulated.

Earlier this year, the New Zealand Government approved 500,000 NZD (£163,000) of public funds for PGD treatment, which involves testing IVF embryos in order to select those unaffected by a particular genetic condition. The new report, around 350 pages long, first outlines the history and clinical use of PGD and then examines the surrounding ethical, legal and regulatory issues. 'I think the report recognises the range of ethical viewpoints', said team leader Professor Mark Henaghan, adding 'in the end it also recognises that modern medicine intervenes in human life in many areas to ease suffering'.

The authors point to inconsistencies in the way PGD is currently regulated in New Zealand. For example, selecting embryos with a genetic impairment is prohibited, which they say is inconsistent with prenatal testing, since parents can choose to continue with a pregnancy even when they have been made aware of a genetic impairment in a fetus. Professor Henaghan said that this means that deaf parents may not select an embryo carrying a gene mutation that causes deafness, 'even when the parents consider that deafness is not an "impairment" but rather a disorder that can be life-enhancing'.

The report also points to the inconsistency of the current rules concerning 'saviour siblings' - in which PGD is used to test embryos to ensure the birth of a baby that can provide genetically-matched cord-blood stem cells to help treat a seriously ill sibling. In NZ, PGD is only allowed for cases in which a couple is also requesting PGD to help avoid a serious genetic condition, as was the case in the UK until recently, before a policy change by the Human Fertilisation and Embryology Authority. The report says that PGD should be permitted in cases where a child is suffering from a severe life-threatening condition, 'whether familial or not'.

On the subject of using PGD to select an embryo on the basis of its sex, currently allowed only for medical reasons, the authors question whether this outright ban is too rigid. It cites the Mastertons, a Scottish couple with four sons who wanted to use PGD to have a baby girl after their only daughter was killed in a tragic accident. The report suggests that to account for cases like these, sex selection could be allowed for 'compassionate' as well as medical reasons. The report also looked at existing policy for later onset and 'lower penetrance' disorders, and concluded that wording recently adopted under the 2004 Human Assisted Reproductive Technology Act appeared to have already extended the use of PGD for such conditions - a move that it said went beyond the scope of public consultation on the issue.

The report also looks at the Maori attitudes to the technique, based on in-depth interviews that reveal 'a general agreement that this technique has the potential to do more good than harm for Maori communities'. However, the research did highlight concerns that Maori may not have equality of access to PGD.

Dr Jess Buxton is Contributing Editor at BioNews and a Trustee at the charity that publishes it, the Progress Educational Trust (PET). She is co-author of The Rough Guide to Genes and Cloning (buy this book from Amazon UK or Amazon USA) and Human Fertilisation and Embryology: Reproducing Regulation (buy this book from Amazon UK or Amazon USA).


Choosing the Genes for Future Children Regulating Preimplantation genetic diagnosis
The University of Otago | 01 August 2006
The New Zealand Herald | 02 August 2006
Scoop | 02 August 2006


03 July 2008 - by Dr Cordelia Thomas 
There is an international trend to greater public participation in government decision making, resulting in a movement toward 'public consultation' or 'public engagement'. These require two-way communication, transparency of the decision making process and meaningful incorporation of public input into that process. However, in practice, much consultation involves tightly-scripted opportunities... [Read More]
23 June 2008 - by Katy Sinclair 
After a consultation procedure, the New Zealand Bioethics Council (Toi Te Taiao), has released advice to the government on pre-birth testing, in a paper entitled 'Who Gets Born?' The year long consultation process polled more than 700 New Zealanders to gauge their opinions on pre-implantation genetic diagnosis... [Read More]
25 August 2006 - by Professor Mark Henaghan 
Choosing Genes for Future Children: Regulating Preimplantation Genetic Diagnosis (PGD), is the first major report from the three-year multidisciplinary project which draws together a team of New Zealand and international researchers in Law, Bioethics, Science, Maori and Paediatrics to examine whether, how and to what extent, human genome-based technologies should... [Read More]

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